Friday, April 20, 2012

Food Fight

Now that Buddy is eating real food that was the focus of most of my questioning with the geneticist. I read so much about people monitoring their MCAD children's food. Low fat diets, avoiding coconut, and one mom avoids processed foods all together. I was told from the beginning to feed Buddy what we eat. I wasn't really focused on food back then as he was still on breast milk and I was busy trying to wrap my head around how to keep him fed and safe. So I just shrugged my shoulders and thought, "OK awesome, that sounds easy."

Now that he is actually eating foods and I have been reading about others and their feeding restrictions I wanted more details. (I probably got them in the beginning but was too overwhelmed) So for all you MCADD mommas here is what he said.

He explained that for years they kept their MCADD kids on special diets and that the end just didn't justify the means. The kids ended up losing weight. And as some of you know, the parents went crazy trying to keep their children away from certain foods. It is impossible to have a somewhat normal life and know exactly what is going in your child's tummy. They tried not regulating diet and the results were great. I have also run across a sweet 18 year old with MCADD super willing to answer any and all questions. She is God sent! She described herself as a fussy eater, she stated that her parents never really restricted anything and that she ate everything in moderation. The only thing that she steers clear of is coconut. So of course I had to ask about coconut oil.

Apparently back in the dark ages before all the fancy testing they used to give children suspected of having MCADD fractionated coconut oil and if it made them sick then they had MCADD. I wonder how many false positives they had because I think it would make me sick. Fractionated coconut oil is processed down till they only have medium chain fats left. I guess they also give this to kids with VLCAD and LCHAD since they can process the medium chain fats. Anyway, according to the geneticist coconut oil only has 2% MCT so it really isn't take much and taking into consideration that every long chain fat he eats turns into a medium chain fat he already has them in his system. He also said that Buddy can process some just not many. I can't wrap my head around all the physics but he said he would be just fine and not to try to avoid it.

I know that everyone has their own comfort level and their own system. Some of us give our kids supplements and some of us don't. Some of us go 10 hours at night before we wake our child to eat and some of us go 8. Some of us have had many trips to the ER before the first year is up and some of us have none. I can't wrap my head around it. The geneticist says it is the rest of the gene makeup that sets all these kiddos apart. Whatever it is I wish they all could be safe and healthy 100% of the time. Am I going to cringe every time a little girl kisses buddy at the park? (the geneticist says there is only more of that to come ;) Absolutely! Am I going to yank him away from her and scold her? No (OK maybe if the are teenagers on my couch :) Am I going to shake my head every time he gets a huge spoon full of frosting? Yes, (I do with my daughter as well) Am I going to freak out about it? No

The geneticist says we are doing great with him, he told me the proof was sitting happily on my lap. I have never been a helicopter mom and don't particularly want to start now. I want my kids to have nutritious and healthy foods but I am glad that I don't have to stop either of them from enjoying a treat. There may be things that don't agree with him and as we learn that we can steer clear of those foods, at least we can let him dictate that.

Our geneticist is pretty laid back, where others just are not. I like it! It agrees with us and our lifestyle. I still do panic and worry that I am not doing all that I should for him but I have moments of that with my daughter who does not have a metabolic disorder. I think we all feel that way about our children, metabolic disorder or not. It must be in the definition for mother "constant worrier."

Tuesday, April 17, 2012

The search is on....

I have been searching for the perfect pediatrician and it is proving very difficult.

I am finding the fear mongers who want us to lock our son away with only play dates at our house where I can enforce a strict "no sickys allowed" policy. I wonder what he would have said if I told him that there may come a time when we will have to send our son to daycare. Would he have called child services?

I am finding Drs that hear about MCADD and instantly put their hands out in front of them in a defensive position stating that they would send my son down the road to the other hospital if he ended up in the ER at their hospital.

I am struggling a bit here, it is hard to think that your child has a condition that some providers don't want to tackle...the search continues.

We do have one more appointment but it is a month away. I am optimistic, he is affiliated with our children's hospital and comes highly recommended.

Only 2 1/2 more days till our appt with our geneticist. Since our son had his first hospitalization my questions have grown exponentially. I cannot wait to get some answers.

Saturday, March 24, 2012

It happened, our first MCADD hospital stay.

I know that I haven't been blogging. I have been lost in a sea of the routine. Funny how something significant will push you to the computer in hopes of sharing an experience hoping it may help someone else.

Our little buddy got his first bout of stomach flu. He is 13 months old and has been doing awesome. Luckily for us and unluckily for her, my sister was watching my kiddos. On the drive to my sisters he vomited, my hubby was hoping that perhaps he was just car sick. When I received the call at work my stomach sank, I knew better, our daughter had the stomach flu just days prior. But she also gets very car sick, I guess a tiny part of me hoped.

He wasn't car sick....
He vomited again so I asked my sister to throw him in the car and drive my direction (she is 30 mins from me and at least 45 from the children's hospital). My instinct told me to have her head to the children's hospital but the fear in me told her to stop at an affiliated hospital 20 min from her house and 10 min from me. Our biggest mistake. In hindsight I am sure he would have been fine, a good question for our geneticist who visits soon.

My husband and I arrived alerted them that he was en route. Of course they said there was nothing they could do till he arrived. He arrived and thankfully a nurse was waiting for him out front. I was impressed. Not impressed though that he had a million and one seemingly unimportant questions. Not impressed that the gal taking his glucose test said several times how great he looked and that his sugar was not too bad. (I was warned about these people). Not impressed that the ER physician casually sat down, reading our "recipe card" of instructions, stressing that he knew the importance of speed. (so why was he sitting sharing stories of his daughters diabetes?) On the plus side the nurse did start the IV on the first try. Our little buddy was upset to say the least, after what seemed like forever he finally quit screaming and kicking and fell asleep in my arms.

The ER physician returned after fluids were started and informed us that we were headed by ambulance to the children's hospital. He had contacted our geneticist and our pediatrician and they both agreed on the course of action. About a half hour later he returned to tell us they could not find a bed for us at the other hospital and that we would be staying put. They had a bed upstairs and we would be followed by the call pediatrician. He also pointed out that all the children at the other hospital were sick with respiratory illness and that the pediatrician here was great. Some of you may be gasping that I allowed this to happen. I did not know better. It was our first rodeo. Oh, the lessons I have learned.

A few facts before I continue. My son vomited approximately 5 times. It started at 6:45am and stopped at 10am (Thank you God that it did not last longer!!!) We were in the ER at about 9:30am and in a room around 11am.

To be honest I was a happy momma. He had his IV glucose and he was happy, IV and all. There were maybe two other children on the floor and the nurses were pleasant. We had a few visitors. OK we had a lot of visitors. I have a big close knit family! Our little guy was hungry but they were only allowing him clear liquids. They had informed us that the Dr would visit after his clinic hours and that we could ask then if we could move on to food. By 6:30 pm and no visit from the Dr we asked if he could at least have toast. Reluctantly the nurse called the Dr and he said we could start him on the BRAT diet (bananas, rice, applesauce, and toast), sweet.....his favorite things. So at around 8:45pm the Dr finally arrived. The rest of this I am not sure that I can do justice to. Bottom line the "unclaimed call pediatrician" no so great. I think more then anything he was pissed because my pediatrician "chooses not to see her patients at that hospital". I also think my hubby rubbed him the wrong way when he asked if we would not be seeing him again until 9pm the following night. He was very condescending and answered our questions as though it were none of our business or that we were idiots for asking. I had to remind him often that this was in fact out first hospital stay. More then once he mentioned that he would rather be home with his family. He also said he felt he was put in an uncomfortable situation because he does not know my sons history. Long story short by the end of his visit we were all uncomfortable and I was sobbing.

We stayed one sleepless night. The pediatrician wanted my son monitored all night. So he was hooked up to cardiac monitors, had a SPO2 monitor attached to his toe, and of course the IV in his arm. Monitors were coming unhooked and beeping all night. I asked in the morning why the monitors and was informed that while I was sleeping he could have had a seizure from hypoglycemia and that no one would know. I wish that I knew if the was standard practice. I was curious how he could get that hypoglycemic with IV dextrose, plus food, and no vomiting since 10am. I guess that is another question for the geneticist.

Luckily we went home the next evening so only one night in the hospital.

I have learned many things. A few of them....
1) go to the children's hospital
2) you have the right to fire the Dr given to you
3) 4 hours of vomiting = 2 days in the hospital

I feel pretty lucky that our learning experience happened with this illness because it was such a short one for our little guy.

Our pediatricians defense was that she doesn't see patients at that hospital because she will not admit to that hospital. Mostly because she wants pediatric nurses taking care of her pediatric patients. She said in 6 years she had never been told there was not a bed at the children's hospital.

It turns out that I have a friend who is a lawyer at the children's hospital and also for the one we stayed at because they are affiliated. We have had several phone calls from the director of pediatrics regarding our stay. Now we are on the hunt for a new pediatrician. Not sure that I completely blame our previous one but I want to find someone that has our back. Turns out that may be harder to find then I thought but more on that later.

Saturday, August 6, 2011

Battles and Blessings

Where has the time gone?
I have lost it in a whirlwind of craziness and chaos.

I have to admit I am beginning to struggle a bit (perhaps more then a bit), not sure how to regain my footing and push on through. The last two months seem to have been a series of battles. Not hard battles just many battles. I have been trying my best to find the blessings in them.

I am sitting here eating snicker doodles rather then drinking the glass of wine that I really want because Buddy (what I have decided to call my 5 month old son) is refusing sleep. He is over tired and fighting it! I am afraid that once I give in and go get him, I will have to feed him, hence the sacrificial glass of wine.
The battle: mommy is tired too and would love a quiet glass of wine followed by her pillow instead of the anxiousness I am feeling listening to him fight against sleep.
The blessing: We spent a wonderful day with my grandparents, full of hugs and love. But also probably the reason that he is overtired.

It seems so small but all of these small battles are becoming the proverbial straws.

So I am going to list some of my bigger battles that have accumulated over the last two months because at least I might feel better about sitting here trying not to cry.

Battle: Buddies MCADD diagnosis which equals to small amounts of sleep and an intense fear of germs and illness.
Blessing: He is beautiful and growing and strong AND we have averted all crises.

Battle: Working full time with a schedule that has been continually changing since returning from maternity leave.
Blessing: I have a job and I really love what I do and my co-workers.

Battle: Since my many schedule changes my hubby and I are pretty much on opposite shifts. The time off we do have together seems to be filled with other obligations. Dinner together has happened once in the last two weeks.
Blessing: Our children need little daycare and the majority of the time they are with family.

Battle: Recovering from bladder lift surgery. Six weeks of lifting 10lbs or less. They did make an exception to my lifting restrictions- I can lift Buddy even though he is already 17+ pounds. But I cannot lift Boo (my 2 year old daughter).
Blessing: After my six weeks is up I will hopefully no longer pee my pants when I laugh, sneeze, cough, or run.

Battle: Potty training Boo.
Blessing: She is starting to get it. It is exciting to watch her grow!

I could probably go on and on. But I probably should go and try to get Buddy to sleep for the forth time tonight.

I am struggling more then I thought I ever would. The Blessing? I have been getting myself back to church. Something that I have not done in years. Though I am not sure I am going to make it tomorrow. After three hours of trying to get Buddy to bed, my plan is to sleep in tomorrow if at all possible. But if I don't make it, my heart is still there.

Tuesday, June 14, 2011

First Scare

We had our first MCADD scare this week.

Monday morning I dropped the kids off at my sisters, fed the baby at 10:30 before I left to work. At 2 I called to check in and she told me he hadn't eaten anything yet. He had a fussy morning and seemed to have a belly ache but at her first attempt he didn't want to eat. He was napping but she was going to wake him to eat at 2:30, the 4 hour mark.

She called me at work at 3:30 telling me that she still couldn't get him to eat. She tried breatmilk and formula and he was having none of it. My husband was closer so I called him to run over there and I quickly tried to call the genetic counselor. Of course she is not in on Mondays. I grabbed my emergency letter from my wallet and called the pager number. Luckily I was patched through to the geneticists office in Oregon. I got a real person who promised she would call back. I waited, and waited, and waited. It seemed like forever though only about 10 minutes. I couldn't wait longer so I called them back. In her haste she forgot to ask my name and had taken down the wrong number. She told me that the geneticist wanted us to take him to the ER. Panic set in as I called my husband.

HE WAS EATING. By the time it was all said and done he had gulped down 6 ounces which is a lot for him. I called the geneticists office and they told me that we didn't need to head to the ER but to feed him more often the rest of the day.

I am so very glad that we didn't end up in the ER. I am SO very thankful.

Monday, May 23, 2011

Back at it...

I think I have just about survived my first day at work. And I am proud to say that I have not shed a tear. Yesterday however was another story. I think I pretty much cried all afternoon. My hubby started out understanding and considerate and by the evening he was frustrated. I understand where he was coming from, I was pretty much ruining my last night before I was back to work.
I hope that I get home and my house is still standing and everyone is snug in their beds. Then the guilt will lessen and perhaps make it possible to sleep. Is it weird that I am excited that I get to wake the baby for a night time feeding just so I can hold him in my arms a few hours sooner? I guess there is a plus to baby having MCADD tonight.
So I work in a hospital in the MRI department and I have a fairly decent schedule for being fairly low on the totem pole. I work 12 hour shifts 3 days a week till about 10 at night. The problem is they are changing up our staffing model, and so far the plans for the future absolutely stink for my family. I am really trying to not freak out.

Do I want to work every evening till midnight leaving my hubby alone to put kids to bed? Leaving the only time for yard and house work on the weekends. And no time for my spouse and I.

Do I want to work every weekend making it impossible for us to leave town but making it so that I can tuck my babies into their beds at night?

It is seeming that we are going to have to make some hard choices......I have been trying not to freak out thinking that somehow it is going to work out ok but it is not looking likely. Really not exactly what I wanted to return to.

Tuesday, May 17, 2011


I wake up in the morning vowing to be a better mother. And by the end of the day I am hoarse from telling my daughter 100 times to leave her brother alone or to stop tormenting the dog. I feel defeated thinking how much I would have rather been hoarse from singing songs and laughing.

I wake up vowing to eat better and by lunch time I have been to the pantry more times then I can count. I feel defeated thinking how much I want to lose this last bit of baby weight.

I wake up vowing to run my old loop around the neighborhood and I feel defeated when I am too tired to even try or I only make it a few yards farther then last time.

I wake up vowing to complete all of my physical therapy exercises and feel defeated when I make it only through a fraction of them.

I wake up vowing to get the toilets scrubbed and the floors clean and feel defeated when all I manage is to get the toys picked up or the dishes put away. (notice I said or, it is usually an or, not and)

I wake up vowing to be a better wife and yep you guessed it... I feel defeated when I can't remember if I even asked him how his day was.

Am I defeated? Not hardly. I would be defeated if I didn't wake up and try to be better. And I really feel that if I keep trying I will get better at something if not all things. I am just going to keep on, keepin on.